Monday, 24 October 2011

There's one day every year to which Grace counts down with unparalleled shiny-eyed fervour. It's not Christmas, or her birthday, or the start of the summer holidays, though of course all of these are also preceded by repeated questioning, date-checking and suppressed thrills.

Her anticipation of this year's event started precisely one day after last year's event. On that day Grace drifted dreamily past me, trailing her fingers along the furniture, her mind turning on internal images of the night before. I asked her if she was alright: she barely heard me. When I went upstairs later to monitor her progress towards bed, I found her at the sink in the bathroom, gazing into the mirror at herself, her tortoiseshell eyes lit with the amber light of her imaginings. As I entered the room she turned to me and said, as though continuing a conversation started much earlier: "... so then, Mummy, next year I can be - "

Halloween is the night when Grace can just be. She is able to step into the characters she draws with such skill and wit; into the pictures she summons inside her head to fortify herself daily. She can be the other person she conceals so fretfully and often unsuccessfully, existing as if behind a torn veil for the rest of the year. Halloween is when, as her favourite character of the moment puts it: freaky is cool. Grace's otherness can rule.

While other children give flight to their fantasies on October 31, Grace simply steps forward from the wings where she has been waiting, waiting, waiting. She basks in the spotlight and adores the attention but even as she laps it up the praise for her creative presentation puzzles her (though lately I think she begins to understand the misunderstanding, and there is a trace of condescension in her gracious acknowledgements.) She is not putting on a character. She is her characters. She sings, she snarls, she pirouettes, twists and strikes impish poses. She is otherworldly and on this one day a year the freedom to exist beyond the constraints of our bland, neuro-normal world brings her a joy that observers can only imagine.

A few months ago I walked down the local high street with Grace. Rather, I walked down the high street behind Grace, who skipped and hopped ahead of me, moving to a tune inside her head. As I watched my daughter dance gracefully and entirely unselfconsciously down the road I felt for a moment as though a window had opened and I could almost hear the melody quicken; the notes swoop; the strings build to a crescendo. The moment was broken by the sound of slow, sardonic handclaps. A man in a shop entrance yelled after her and cocked his head at me: "Nice moves she's got there, eh?" Grace stopped as abruptly as a puppet whose strings have been cut. She rushed up to me and clutched my coat, tucked herself in under my arm for cover. "Why is he laughing at me?" she hissed embarrassedly up at me. "Why?"

I shushed her and clucked and gestured surreptitiously at the man and said: "Because he's rude and he's got no imagination."

Inside, I was remembering the very first Halloween when Grace dressed up. She was two and a half and we were living in Washington, in a picket-fenced suburb which was transformed that night by flickering pumpkins and candles and strings of fake cobwebs festooning the plentiful trees and bushes that lined the avenues. That year she had fallen for the Little Mermaid. (We did not yet know that it was the first of a series of single-minded obsessions, nor what that would signify.) To delight her, I ordered a mermaid costume from an online party store. When it arrived it was more Rita Heyworth than Ariel, but no matter, she donned the sequinned, fishtailed frock and the bright red bouffant wig and with an expression of ecstasy immediately launched into a word-perfect rendition of her favourite song from the Disney movie.

Her father has lovingly stored the video film we have of her from that night but I can remember every moment of her performance. She recited every single word, despite not understanding many of them (and having to pause now and again to spit out tendrils of her voluminous wig, to muffled parental giggles off-camera.)

She was gorgeous throughout but the final moments of the song have a bittersweet resonance as they play in my mind. She sings: "When's it my turn? Wouldn't I love, love to explore that world up above? Out of the sea, wish I could be, part of that world."

Monday, 17 October 2011

I spent the first days after the race in a teary, exhausted haze. I wanted to talk about it constantly and relive every moment. Then I would want silence and solitude to rest and consider. As in the days immediately after childbirth, I was worn out and exhilarated and bruised and hyper. A laugh would end in tears. A groaning shuffle to the sofa would transform half-way into a waltz and a whoop.

My husband was very patient.

I had a sense that everything had changed. I was giddy with the promise and potential of what I had found: a role in which I could make money -- in the old-fashioned way, by sweaty toil -- to be spent on improving life for people with autism and Asperger Syndrome. By running the Royal Parks I collected some £1200, which with a charitable donation from my workplace was likely to reach £1800. When I told the staff at the National Autistic Society I could feel my voice tremble with the pleasure and passion of it. I had done a good, good thing. I posted pictures of myself everywhere: captured in a snapshot on the finishing line looking pink and flushed and ecstatic in my NAS running vest. I debated on Twitter whether my finishing time was honourable or not. I wrote Facebook captions full of exclamation marks about how wonderful it had been. I emailed friends and family under the auspices of saying thank you to point out again how much I had raised and how hard I had worked. And, of course, I blogged about it.

I was high on my own success.

Meanwhile, Grace continued to go to school every day. She seemed calm. She was drawing a lot and her mania for Monster High seemed as strong as ever. Most sentences started with a description of a new character she had invented, or a dream that she'd had about them, or a play that she'd written about them. But there were long, lucid-enough periods in between. And our scuffles over homework were muted.

Then one evening when I was putting her light out and tucking her in to bed she started to talk in torrents. A girl at school -- whose behaviour had been making me quietly uneasy since the start of term -- had gone for her. Following weeks of spiteful asides and snidely determined whispers engineered to undermine Grace, this child had fronted her out in the playground and told her to stop making claims on any of her friends. They were, she proclaimed with relish, only being nice to her because she had Asperger's Syndrome.

With her hands over her face, weeping and rocking under her duvet Grace recounted to me her reaction. Spinning with dismay she had shouted back. And, bless them, several of her friends had stoutly declared that this was not true. Later, with the conscientiousness of nine-year-olds, they recounted in detail to Grace everything that this other child had been saying about her over the weeks, all of it pure poison.

Any parent will know the sick, dark feeling that spreads like an inkstain over your heart when your child tells you they are in pain. Mine was extra bitter, with a side order of shame and remorse. All the while I had been congratulating myself on changing the world, Grace was trudging through a parallel universe where everything was just the same.

I have talked to the school. I am watching that child like a hawk. I am listening to my daughter.

And after some time off, I am running again. This time I am training to complete the London Marathon in April next year, hoping that some of the millions of people watching the event -- even more than usual I hope, in an Olympic year -- will see the name of the charity written on my chest and will want to know more and want to help.

Monday, 10 October 2011

I woke at 5.30 to the sound of rain pelting down in the darkness outside. Every possible cliche went through my mind: was I tough enough? Was I brave enough? Was I completely mad? After so many months of training I would find out what I was really made of. It felt like being sixteen again and waking on the morning of my first exams: the performance I put in over the next few hours had the potential to change the rest of my life completely. Nine months ago I was lost and broken: flattened by the circumstances of my life to such an extent that my doctor was using words like 'depression' and 'nervous breakdown'. Now, having mapped out a route back to sanity and purpose, to looking after Grace and looking after myself, I had to travel the final, toughest part of the journey.

And I had to do it alone. I planned to leave well ahead of the rest of my family and see them later by the side of the route. I wanted to be alone in my final preparations. I shivered, and got up and got ready.

Before departing I looked into Grace's room to say goodbye. Her hair was fanned out on her pillow; her duvet a tangle of knots. Against the noises from the rest of the house that signalled it would soon be time to rise, she clung tightly to sleep. I went to her and kissed her eyelids gently and she murmured: "Please run slowly Mummy, because when you're finished and we come back, I've got to do my homework."

Downstairs as I stood by the front door, Betty bounced up to me in her pink sleepsuit, her hair a wild mess, chuckling. "Runrun, Mummy!" she exclaimed, pointing at my now-familiar clothing. "Runrun!"

On the tube, the overhead lights were harsh against the darkness of early morning. Some way down the carriage sat a grumpy-looking man in a tiger suit pretending to look at a map of the race, betrayed in his small piece of theatre by the nervous flicker of his eyes. My running partner Karen and I sat side by side, swaying with the motion of the train, watching him and giggling nervously. I suggested that perhaps his discomfort stemmed from the fact that he'd discovered there was no way to pee while in his suit. She thought that perhaps he wasn't running at all, and just liked to go out as a tiger on Sundays. The train nosed deeper and deeper into central London, where more and more runners boarded. By the time we arrived at our final stop, we were all wedged close and starting to sweat: all these participants who had been dutifully hydrating themselves ahead of the race according to sporting advice, were now sweating it out instead inside a hot tin can.

Outside the sky was steely, though the rain had stopped. We walked and talked nonsense to each other, babbling to cover our nerves while observing the scene in front of us: crowds of runners converging on the race point, queuing to check bags, to use toilets, to visit the rows and rows of canvas tents that flapped in a cold breeze that brought with it the scent of Deep Heat. We stood on the edge of it all for a moment and watched. Stewards wearing thin plastic anoraks and tangles of coloured lanyards and passes around their necks patrolled the queues for the toilets, braying metallically through megaphones that there were separate urinals for men around the back. About half of the men who were lined up peeled off in grateful relief to look for them. Those still waiting for the stalls coughed and shuffled their feet. A sense of nervous anticipation lay over the scene like mist.

As we made our own preparations I eyed the crowd. Everyone looked lean and limber. In front of me stood a man wearing a see-through white tee-shirt that clung to his every rippling abdominal muscle as he brushed his hands through his Hollywood hairdo and stretched expansively. Beside him stood a golden woman with a long vanilla plait of hair and honey-coloured sinewy legs who looked like she'd never broken a sweat in her life. My heart started thumping uncomfortably. Where were the reassuringly chunky ones? Where were the runners that looked like mums who ate chocolate? Where were the ones with slightly mottled purple legs and a bit of a wobble round the middle? O god -- what had I done?

But then it was time to run. Joining the blue-banded runners aiming for a time somewhere between two and two and a half hours, Karen and I stood shoulder to shoulder in a crowd at least fifteen people wide that reached down the avenue as far as we could see. A sudden bang -- the official starting gun -- elicited a round of exited applause and some whoops. And then we stood for another five minutes, hopping from one leg to another and shuffling along bit by bit as stern-looking people around us checked water bottles, food supplies, headphones and playlists. And then there was the start point and the big red digital clock.

I don't remember much of the first three miles. We were moving, running, looking at each other occasionally, raising eyebrows and smiling and not thinking much. The first part of the route took us out of the path and down along the side of the river towards Temple. It wasn't very nice -- a long, straight road past bands of runners already coming back up the other side. I was starting to feel uncomfortable and realised I'd put far too many clothes on. Karen and I kept pace, watching what those around us were doing. To my immediate right an odd character loped along, wearing 70s Dunlop 'bumpers' as my Dad would call them, that he flopped down hard with every huge stride he took. Every ten or so strides he would stop and walk, wiping sweat from his face. Then he'd start up again, flailing and thumping along. To Karen's left was a wheezy breather: a man in a pale blue tee shirt with a similar complexion who looked to be in extreme discomfort after three and a half miles.

At this point I decided I wasn't going to last the whole run if I didn't take off some layers, as I was starting to feel horribly hot. Glancing about I saw that although the runners were still bunched tightly there were few spectators along this less picturesque part of the route. Quickly and still running I peeled off my vest, emblazoned with the National Autistic Society logo, and then took off the surplus tee-shirt I was wearing beneath it. At that point I glanced up and realised there were about 300 people watching from a bridge above. Karen laughed and handed me back my vest as we ran beneath the bridge to cheers and whoops from the spectators.

Around five miles Karen got a stitch and slowed. I stayed just ahead of her as we moved through Theatreland and turned left at Trafalgar Square, glancing back regularly to check her progress. "Go ahead," she mouthed, waving me on.

And then we were back into the park, streaming around the front of Buckingham Palace and down along a packed road of runners and spectators, flags flying, drums thrumming, cheers and whistles urging us along. I knew my family and the NAS crew were waiting at 7 miles and ran craning my head to see them. Suddenly to my left there was my sister, anxiously scanning the crowd. I jumped and waved and ran to her and she spotted me, and her face immediately lit up and then contorted into tears as a rush of emotion hit her. My mum and dad and little sister and baby niece all yelled my name and jumped up and down with glee. Delighted and thrilled, I moved up a gear and rocketed past them grinning, to where my husband stood with the kids and the NAS staff, all waving madly and cheering. Moving faster now I could see Chris, and the boys and Betty and there, there was Grace -- her sweet, sweet face and her hair blowing in the breeze -- looking happy and anxious and pleased all at once. A huge sob escaped me. I blew kiss after kiss at her as I ran past. How could I have thought I was alone?

Suddenly I had wings. From miles seven til ten I was absolutely flying: totally wired and excited and fuelled by a massive adrenaline rush. I could do this. And more: I was loving it. I overtook people, motored through the bends and handled several inclines with ease. I caught up with the pacesetter bearing the flag for 2hours 10 minutes and passed him. It was beyond wonderful. My legs were like pistons. I felt sure and strong and absolutely invincible. The hair on the back of my neck tingled with the pleasure and excitement of it. At ten miles I saw my husband and kids again, calling and clapping. Grace had her arms out over the barrier, reaching to me. "Mummy!' she shouted. "My mummy!"

At this point I thought: we look comfortable. I'm running with a pack of proper runners, and we're easing along. Then I noticed the people on the other side of the barrier, pushing back up the hill. These people were ahead of us. Some of them did not look comfortable. Some of them did not look well at all.

We surged downhill and turned -- it was ten and a half miles along and suddenly I did not feel like an Olympian any more. My legs felt thick and my feet were landing heavily. I was starting to feel a bit sick. At mile eleven I was suppressing extreme discomfort and the first whisper of panic. At mile twelve I suddenly remembered that the race was not 13 miles at all, but 13.1 miles. Suddenly that 0.1 mile was a game-changer. I couldn't possibly run more than 13 miles. I would never do it. People were passing me now on either side: people who had kept something in reserve. They were checking their watches, nodding with satisfaction, going up a gear. Neat ponytails bobbed in front of me. Straight-backed muscle men went into fifth gear and whooshed past. I let loose a torrent of obscenities under my breath. I'd done this all wrong. My run was more of a stagger by now. Beside me another runner slowed to a walk, shaking her head with regret.

I told myself: I will not walk. I will not.

Ahead of me was a sign announcing that there was 800 metres to go. It might as well have said another 8 miles. By now I was weaving with exhaustion.

Then came a sign saying 400 meters, and I thought: maybe.

Then came a sign saying 200 metres and I could see the finishing line. I experimented, asking my legs to move faster. They did. I asked them to go faster still. They did. I straightened my shoulders. I was running, properly running again. The crowds of spectators on either side of me were three-deep and roaring approval. A massive grin split my face. I was purely, blissfully happy.

As I went over the finish line my body suddenly spasmed with sobs. Around me people bent over and grabbed their knees, or clutched each other in ecstasy, or shook hands and blew out hard. The first person I saw in the crowd was my sister. I made my way to her on legs made of water and she held me fast while I cried. "My sister," she told me. "Oh, my sister." We were both crying and laughing. My mum was there and hugged me. My dad appeared, so moved he could hardly talk. My little sister hugged me so tightly that what little puff I had left was expelled and I had to ask her weakly to let go now.

It was an age before my husband found me. The wheel had come off Betty's buggy and he and the children had to struggle with it across miles of mushy park grass to get to the end point. Grace was crying with frustration at being unable to find me in the crowd. Betty was wearing a National Autistic Society tee-shirt the same size as her. The boys looked weary. My husband looked weary. But then they saw me and rushed to me and I was enveloped in love and kisses and congratulations.

From the tangle of arms and heads, Grace's face emerged. She gazed up at me. I will remember that look for the rest of my life.

Saturday, 8 October 2011

I've woken with sweaty palms and a jittery stomach, struggling to remember what's approaching to make me so nervous.

This morning the baby didn't rouse me, nor did my alarm. I'm under the duvet looking up at the fingers of pale light along the edges of my bedroom curtains and slowly remembering that I don't have to get up. I don't have to do a long run today. I have to rest.

The race is tomorrow.

Oh God. I swallow down a sudden blockage in my throat. I feel as though I'm preparing to go on a date with someone I really, really like: the anticipation is overwhelming, as is the worry things won't turn out the way I'd hoped. All the signs are that it will be great fun, if occasionally awkward or effortful. I'm having to bat away self-deprecatory imaginings: what if we don't get on? What if all my preparation was in vain? What if I have spectacularly misjudged this and the whole thing is a total disaster?

My mouth is dry. I fling the covers off and go to the kitchen to make coffee.

Downstairs I count out spoonfuls of dark brown powder and wait for the kettle to boil, half-listening to the rolling water and tapping my fingers on the counter as my thoughts turn. Of all the mornings in the world not to be running, this is the very worst. Now more than ever I need the soothing anaesthetic of a steady pace, a thumping heart; the back-and-forth piston of my arms and the sound of my own breathing loud in my ears. I need to be distracted by physical effort to shut down this noise in my head.

I pour the coffee and sip and pace. In my skittish state the hot, bitter liquid goes straight through me and I have to bolt for the bathroom. I realise I am actually trembling.

From upstairs comes the sound of baby Betty waking up. I hurry to prepare the breakfast things, glancing up and out of the window as I do so. The grey sky looks back at me neutrally. There are no birds, no neighbourhood cats stalking through the bushes. Even next door's rag-tag bunch of kids are still indoors and silent. The suggestion of a breeze lifts one or two leaves on the willow tree. I am aware of an intense feeling of anticipation. Even the garden seems to be holding its breath.

Breaking the silence, my phone pings with another good-luck message from a friend. I mutter ungraciously under my breath. I wish I hadn't told anyone now, I think, blatantly ignoring the nonsense of this. (The kindness and generosity of my friends and family means the National Autistic Society will reap £1,000 when I cross the finish line on Sunday.) If only nobody knew what I was up to and I could slope off and do this thing with no expectations.

And another thing -- what on earth am I going to wear? The heatwave has passed, thank goodness, but it's not entirely clear whether autumn has properly arrived either. I scroll feverishly through weather forecasts, which mention a cool start, a warmer morning, possibly rain, possibly winds. Layers? A hat? Never has my wardrobe caused me such anxiety -- except perhaps for the last big date I went on, which happened almost exactly four years ago and resulted in the biggest love of my life.

Thinking about this I brighten and straighten my shoulders. I'm a good judge of character. This may be the first time I've done this but I've been around the block enough times to know when I'm onto a good idea.

And besides, how many dates involve thousands of spectators cheering you on?

Monday, 3 October 2011

I thought that it would get easier. Instead, I'm just getting used to how hard it is.

I'm writing this long-hand in my notebook, journeying home, as my fellow commuters read and doze and sway. One sitting close to me takes occasional glances at my notes. I do hope she isn't moved to ask if I'm alright. The first sign of sympathy is likely to start me wailing.

I'm slow and thick-headed and have been all day. This morning I felt the way I used to early on Saturdays in my rambunctious twenties: exhausted, dry-mouthed and headachy. Yet I had consumed no alcohol and knew I could not sleep it off or wait for the next day's fresh optimism and energy.

On Friday night Grace cried and cried as she recounted the latest incident of classroom teasing. On Sunday night, having steered her through an anxious weekend and hours of impenetrable homework, I cried and cried as I sat upright in bed in the darkness, unable to sleep for worrying about her. This morning, as we perched knee to knee on tiny chairs in her classroom, her teacher blinked back tears as she apologised for the way she had handled the incident.

It feels like Wonderland, as though like Alice we are all bobbing about in a sea of our own tears; struggling through the brine in a crazily distorted landscape and confronted with endless un-solvable riddles.

On Friday afternoon Grace's class was doing computer work, sorting through photographs of their recent school trip and writing up their reports. One of the pictures showed Grace in an ungainly pose, snapped with an expression that rendered her ugly. Observing her discomfort, a classmate gleefully decided to download the photograph as a screensaver. Grace shrieked and slapped her. The classmate slapped her back. Grace burst into tears, drawing the amused attention of another pupil, while another still printed off the photograph and started waving it about. At this point Grace bolted out of the class, hurt and embarrassed and furious and entirely unable to process the experience. It is bafflingly unclear to me how the incident went undetected by her teacher -- but it seems she was busy with another pupil, and it did.

I'll run through this. I got up that hill last week; I completed nine miles in unseasonal heat with insufficient water on Saturday. The half-marathon is in 6 days. This is just another stage in my training: another lesson in staying power.

Grace has been volatile all weekend: both in need of soothing routine and fretfully chafing at any constraints. In the car on the way to her drama club on Saturday afternoon, she picked up the thread of her story again, and told me how she tip-toed back into the class and told the teacher what had happened, confessing to her own part in shouting and hitting. The teacher warned the class that anyone talking from then on would miss playtime on Monday. Shortly afterwards, Grace whispered to her neighbour that she liked her drawing. The teacher promptly banned her from Monday play.

Grace reached the conclusion of her story and once again I found myself sitting in the car with her -- so many of these scenes involve us sitting in the car -- trying to staunch her great, gusty sobs and trying again to persuade her everything would be alright. I swore to her that she'd get her playtime back. I swore to her that I would take her to school and not leave until I had rebuilt it as a safe place for her. It felt like being confronted by that hill at mile 8 and wondering how the hell I would keep going.

This morning I went to school with Grace, feigning light-heartedness as we walked there, while inwardly boiling with fury and questions: how did her teacher not see this? Why was this incident not shut down instantly? Had she read Grace's file? Had she undergone training? Had she any idea of the misery that Grace endured over a long, long weekend of knowing that she would still be in trouble on Monday? I wore heels and a smart dress and carried an impressive handbag stuffed with papers and books on Aspergers: a mother's battle outfit.

I had anticipated another long wait in the school office, sitting on the grey felt chairs and reading for the hundredth time on the wall opposite, the laminated school rules about being nice to each other, while beside me the gluey liquid of the ceramic water feature trickled and plopped. I expected faintly defensive staff and a subtly different version of events. Instead I was greeted promptly by Grace's teacher and the school's special needs co-ordinator and whisked into an empty classroom where they both hastened to apologise and reassure and tell me the incident had been dealt with. It was clear both had discussed what happened and felt bad about not having dealt with it better. Grace's teacher paused several times to swallow hard and control the glistening of tears as she told me how fond she was of my daughter and how bright and funny she was. At the end I stood up and shook hands and left.

It was singularly depressing, unutterably wearying. I am sure they will do their best. I am sure it will happen again. In the meantime I will keep running. At least I'm starting to learn where the hills are.

About Me

Mother, marathoner, campaigner: I started this blog with my elder daughter when she was diagnosed with Asperger's Syndrome and both of us were struggling to find support. I wanted to give Grace a voice and show the courage and humour with which she overcame challenges. I also wanted to raise awareness about autism, and to that same end, started long-distance running in support of two autism charities.
I also campaign for diversity and inclusivity as leader of the Women's Equality Party, which is a new non-partisan force in British politics uniting people of diverse ages, backgrounds, ethnicities, beliefs and experiences in the shared determination to see women enjoy the same rights and opportunities as men so that all can flourish.